The U.S. Government Accounting Office estimates that, of the approximately 72 million children in the United States, over 10 million currently live with a serious chronic condition. Current models of care for seriously ill children, including hospice/palliative care programs, are neither sufficient, nor sufficiently available to adequately address the needs of children with life- threatening conditions and their families.

Children’s Hospice International (CHI), with technical assistance from the Centers for Medicare & Medicaid Services (CMS), Congressional Members, and healthcare leaders, developed the Children’s Hospice International Children’s Program of All-Inclusive Coordinated Care (ChiPACC) to overcome existing barriers to appropriate care for children with life-threatening conditions and their families.

The ChiPACC initiative was undertaken to provide access to care for ALL children and their families meeting the criteria of diagnosis with life-threatening conditions. This access includes children and families whose medical care is reimbursed by any payer source: private insurance, workplace coverage, managed care, or Medicaid.

Through Congressional appropriations, CHI — with technical assistance from the federal CMS — has established ChiPACC programs, first in Florida, then in Colorado, California, New York, North Dakota, and is working with other states and providers as well as the US Department of Defense, with a pilot program at Walter Reed National Military Medical Center. The experience of the initial programs has demonstrated the ChiPACC model’s flexibility through the diverse approaches to implementation and overall cost effectiveness.

Current System

According to data from the US Health and Human Services (HHS), children with chronic illness and complex health care needs are living longer and require creative approaches to delivery and coordination of care.

Over 10 million Children (about 14% of US children ages 0-17) have special health care needs. This number is increasing slightly every year.

Under the Patient Protection and Affordable care Act, hospice/palliative and curative care can be provided concurrently to children enrolled in Medicaid or the Children’s Health Insurance Program (CHIP). While this is a step forward it falls short. Thanks to the leadership of CHI and others in the field, this practice is being implemented in an increasing number of institutions nationwide. Thus parents no longer have to choose between hospice/palliative care and hope for a cure in the last six months of life. It is important that this type of support is available from the time of diagnosis of life threatening condition in a child.

Adult hospice programs are generally not equipped, and their staff is not trained to address the needs of the children and their families.

The present system of pediatric care leads to high-cost, crisis-driven access to medical care and excessive reliance on institutional confinement, accompanied by a social cost in the form of disruption in family life, isolation, loss, or reduction of employment, and removal of the child from the community.

ChiPACC Model: Overcoming Barriers

ChiPACC offers a comprehensive and cost effective continuum of care for children with life-threatening conditions and their families from the time of diagnosis, with hope for cure, through bereavement follow-up if cure is not attained.

Families of children with life-threatening conditions are not forced to choose between curative care and hospice/palliative care, but instead the ChiPACC model allows palliative care to be offered along with treatment from the time of diagnosis.

The ChiPACC model provides early and continual intervention and case management functions to prepare families and health care providers to promote appropriate support for the seriously ill child.

With respite care, provided by the ChiPACC model, parents are able to continue functioning in the community.